17: Debating Antibody Testing for your T1D’s Siblings

Sweet Talk for Parents of Kids with Type One Diabetes

As with many medical issues, testing can be done for T1D markers. The problem is that those testing results give a measure for a particular point in time, and a negative result does not mean that someone will never be diagnosed with diabetes. For parents, it can be a real dilemma whether to test a child for these markers. Today’s question comes from a mom who doesn’t know what to do regarding this testing for the siblings of her T1D child. Join us for a closer look!

Show Highlights:

• Guest: Danielle is the mother of three girls, and her middle daughter (10) was diagnosed T1D about two years ago.
• She has constant worry and pressure that another of her girls will be diagnosed with T1D, knowing how difficult that would be to process.
• Danielle’s Question: “I want to know if I should have antibody testing for the T1D markers on my other two children. I have concerns about the testing, and I don’t know how I would psychologically handle the information if they tested positive for the T1D markers. Both roads have trauma involved for me, and I don’t know what to do.”
• JoAnne’s Answer: “It makes sense to me why you are torn. I want to share my personal story of how we tested (after my son was diagnosed) and found that my daughter had the markers, but only after the second year of testing. A snapshot at one moment of testing doesn’t give a solid picture, so even if you did the testing to reassure yourself, that doesn’t mean you have a fixed piece of data for all time. In my daughter’s case, we had an easy transition into diabetes with her because of the early interventions that were taken as her pancreas function was failing. This is the danger of having so many medical choices because they kick up so many emotions for us. You have to decide in a thoughtful way what you can handle, and I believe that you would learn to make it work if you had a second kid with T1D. The grief you encounter is not a circle but a spiral; you won’t grieve the same if a second child is diagnosed. The difference in having a second T1D child is that the grief is still there, but the learning is also there. You know what you need to do, and you’ll be in a different place at that point. One of the toughest things about T1D is learning and accepting that we have no control over what’s happening to our child. If, God forbid, one of your other children is diagnosed, you will recognize the signs earlier, and it will be a very different experience for you. You have the strength and capacity to manage what comes your way, and you need to understand how to talk to and soothe the part of you that is terrified in the not knowing. There are no easy answers here, and I think you are doing a good job at knowing yourself.”

Resources:

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